ILC - The Odd One Out?

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  • Woodylb
    Woodylb Member Posts: 1,454
    edited February 2014

    claireinaz,

    Liver enzymes can get high after cancer , some meds cause high liver enzymes, and also fatty liver causes it and they both don't necessarily mean anything. I've had reoccurrence with ILC liver mets with no symptoms or high enzymes or anything , it was found by mistake. So please do not worry, it could be from arimidex or if you gained weight... Keep us posted and i hope it is nothing but a false alarm. xxx

  • Holeinone
    Holeinone Member Posts: 2,478
    edited February 2014

    hello all, 

    My grandma was 23 when my mom was born, my mom had me @30, I was 31 when DD was born.

    Claire, did you have lumpy, chemo, rads and then a year later decide on a  mastectomy ? I never had a MRI, I have asked for one, on the good breast in the future, Mo & RO said NO. Not necessary.  Not sure if I asked you already, was the liver enzymes found via tumor makers? Tomorrow is Friday. Hope you get good news soon. 

  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2014

    Hi, yes...I had lumpectomy which was how the bc was found; then all tx, then a bmx/recon last July.  There was never any question about MRI'ing both breasts for me--oncol. knows ILC tends to be multifocal.  

    Tumor markers and liver enzymes not related at all.  Oncologist thinks it's from too much wine celebrated over Valentine's Day and isn't too concerned but she's not the one that had a dx and positive nodes.  I was also taking tons of aspirin because of hip aching and join pain from arimidex, as well as glucosamine, and a bunch of supplements daily. I've stopped all of them except for rx meds and of course the alcohol was a fluke, because I don't drink normally and certainly not that much normally.  Still...whenever there's an aberration in any test for us, we tend to go to the dark places immediately. 

  • smrlvr
    smrlvr Member Posts: 422
    edited February 2014

    Claire,  I know how anxiety pt provoking this is.  I would be the same way.  That being said, lots of things can elevate liver enzymes.  Keep,us posted.  You will be in my thoughts and prayers.

  • bc101
    bc101 Member Posts: 1,108
    edited April 2014

    Hi all,

    This is a very interesting thread. Since my diagnosis I've always felt like the odd one out. In fact I even used that term with my BS. After I was tested low with the Oncotype and they found no BRCA gene, I underwent preoperative hormonal therapy to try to shrink for breast conservation. I couldn't find anyone in my situation when I started treatment and as a result I drove myself crazy with worry. I think there should be specialists who only care for those with lobular cancers. There are a lot of myths running rampant out there, one of which is that it spreads to the other breast. One of my docs states that is simply not true. I had a proph MX on my healhty breast just because ILC is hard to find, not bec I thought it would spread. But either way, why take a chance and have to go thru this again?

    I was diagnosed at age 57 and found the tumor myself. Always had mammograms since a very early age before they changed the recommendations. Always had dense breasts and cysts that had to be aspirated. I actually felt "something" hard in my breast but thought it was another cyst, so didn't go in. It wasn't a lump, so I didn't think much of it. After I was diagnosed, even though my tumor was 5+cm, it did not show up well on any imaging.The hormonal therapy shrunk my tumor, but not enough to do breast conservation. I would not recommend breast conservation to anyone with lobular cancer - my tumor was found to grow in lines outward like spider legs. How can you possibly cut around something like that? I think my BS should not even have attempted it, but oh well....

    More stats: started menstruating at about age 10, had undiagnosed endometriosis, infertility issues, no children, drank a lot as a teenager, ex smoker, sedentary as an adult, a bit overweight, liked my wine, had some major life stressors five years before my diagnosis. I have a history of bc and ovarian cancer and lots of other kinds of cancer in my family tree, but no known gene. They thought maybe there was a gene but it skipped my branch. 

    I joined a breast cancer registry at my clinic. They asked a lot of questions similar to the ones brought up on this thread, plus a LOT on weight gain and loss. My mother was 28 when she had me, grandma was 22 when she had mom.

    Thanks for starting this thread just for us ILC'ers!

  • 4sewwhat
    4sewwhat Member Posts: 2,093
    edited February 2014

    HI Claire!

    The ladies are right, anything can throw off a liver enzyme.  My gallbladder acts up from time to time and it sends them all wonky.  It is really probably just something that was out of whack that dayl

    It's easy to say not to worry, but try not to go too far down the dark path!!!  Hope you get great news really quickly so you don't have to worry for the weekend.

  • Katarina
    Katarina Member Posts: 386
    edited February 2014

    California has recent legislation that makes MRI and biopsies "the testing protocol" for women with dense breasts. After my biopsy caught the ILC the next thing ordered was an MRI. It has been one of the most important tests done in my mind. The signal intensity was better and found the spread.

    Diem I'm sorry your getting different opinions. That makes it all the more stressful. I would definitely NOT regret the BMX. You are preserving your sanity in the future. I agree with going with your intuition and not listening to the "hammers who only hit nails".  Take some time and don't feel pressured. That's what I hear is the worst issue with BC and ladies dealing with doctors. If they're pushing you to decide too fast, slow down and question everything. 

    I was 31 when I had my child. I don't know how old my birth mother was. I do think age is relevant after reading the stats shared and Onc studies.

    Hollyboo -- pages back -- posted a number of good links on ILC studies and stats. 

    Welcome to all newcomers. 

    It's nice to see this board still active.

    Hugs

    Kat

  • RobinLK
    RobinLK Member Posts: 840
    edited February 2014

    My grandmother was 29 when she had my mom. My mom was child 7 of 9. My mom was 21 when she had me and I was 27 when I had my daughter.

  • bc101
    bc101 Member Posts: 1,108
    edited April 2014

    Katarina,

    Wow, that is really awesome news!!! I found an article referring to what you mentioned and I hope it is enacted in every state. 

    How many women here have dense breasts?

    I had mammograms every single year since I was in my mid 30s. The longest I waited was the last time - 18 months. I waited because of all the talk that mammograms were not really necessary every year, remember that? I found my tumor myself quite by accident and THEN they did the MRI, US and biopsy. According to the article below some worry that this law would lead to unnecessary testing and increased cost. Gee, let's see - what's cheaper? A biopsy and MRI or cancer? My total bills for surgery and testing were about $114,000 and I'm not done with reconstruction. Plus that doesn't include the costs of the unsuccessful lumpectomy and re-excision at my 2nd clinic, plus all the diagnostics from the first clinic. Maybe I'll add those up, too.

    I disagree with Dr. Susan Love when she says it won't prevent deaths. I think this law would save lives in terms of PREVENTION of large tumors in women with dense breasts! Women with larger tumors DO have a greater risk of dying - their cancers are not found until later stages.

    I know I'm preaching to the choir here, but I believe this law could literally save lives, especially for women like us with dense breasts and lobular cancer!! It sounds like the naysayers for this recent legislation could use some feedback, ladies

    http://articles.latimes.com/2012/sep/24/news/la-he...

  • Nocompromises2013
    Nocompromises2013 Member Posts: 292
    edited February 2014

    hi All

    I am just back from a pharmacist compounding course BC came up quite a bit 

    My training makes me a pretty conventional care giver BUT one compound make me sit up and listen 

    Indole 3 carbinole (I3C) 

    I need to do a LOT more research to convince myself bit thought we could share the load - seems to possibly ?? Block E1 oestrogen ( the bad Oestrogen) in our body's 

    As I say ... No medical claims here. But we should read more !!!

  • sandra4611
    sandra4611 Member Posts: 2,913
    edited February 2014

    Please check out the website for women with dense breasts and see the progress that's being made. areyoudense.org is their website and they have a FB page too. The website is best.

  • Lily55
    Lily55 Member Posts: 3,534
    edited February 2014

    Th ere is a lot of info on indole 3 carbinol including studies on canceractive.com.  _Drug companies are researching it to isolate the active compound so they can patent it!!  

  • maryland
    maryland Member Posts: 1,298
    edited February 2014

    Thanks Sandra, wish I had seen that website a few years ago, kind of late for me now but I will certainly do my best to spread the word. My mammograms have always mentioned the words dense and fibrous. I never even heard of BIRAD until 2 weeks ago. If I had known to ask for an ultrasound or MRI or even ask for a detailed mammography report I might have found my ILC before it got into my lymph nodes. I hope more physicians will begin educating women on this topic and informing them of what they need to look and ask for. Genny

  • Katarina
    Katarina Member Posts: 386
    edited March 2014

    The dense breast testing protocol change legislation was only passed here in Calif. about a year or so ago. Just before my diagnosis. I had mammo's every 3-6 months and ultrasounds for 6 years, and told not to worry. They missed it the entire time. It wasn't until my nipple inverted and the mass was huge that they decided to do a biopsy.

    I talked to some people involved in getting the legislation approved and they said it was partly due to all the ILC patients and mis-diagnosed advanced stage BC in the state.  It was becoming a crisis in lawsuits and women falling through the BC industry cracks. 

    I think for us the issue should be an MRI testing protocol for ILC recurrence/mets. 

    I've heard a lot of stage IV women say that with all the scans it was the MRI that caught the sneaky mets. If so, and we know how impossible it is to get an MRI, we should have this approved insurance coverage and testing for the "already found ILC" BC patients. 

    HOW MANY WOMEN DO YOU KNOW WHOSE METS WERE FOUND BY MRI??

    Hugs

    Kat

  • DQ77
    DQ77 Member Posts: 39
    edited March 2014

    Hi ladies--it's been a crazy week with doctors appointments but I've made a decision! And came back with some more information..here's a quick summary:

    MO #1 (Private): Recommends TCx4 or ACTx8, and said it's going to end up being my decision but she would recommend ACT since it's more aggressive and I'm so young

    MO #2 (Stanfod): Recommends Oncotype DX first, but if I'm decided on chemo he would recommend TCx4

    MO #3 (Private): Recommends Oncotype DX first, and depending on results would recommend TCx4 or TCx6 (first time I've heard this)

    MO #4 (UCSF): Recommends TCx4 or ACTx8, and quantified that ACT would have a 1-3% survivability benefit over TC, and would be totally comfortable with me doing TCx4.

    Decision: Seems like TCx4 is the winner!

    Lojo--you're right, I think the bmx was the right decision, regardless of the % of recurrence. I think I just got really flustered after that second opinion., because he said that when ILC happens, there's a higher risk of it PRESENTING itself contra laterally, rather than lifetime risk of the other side…which was the fist I've heard. I did order the oncotype test, but since my KI 67 came back at 55% I think it's likely that I'll need chemo. Will definitely update when I get the Oncotype results!

    Holeinone--Thank you for your advice--so sorry about your nodes! Your tumor in your breast is small though--does your ILC have a high KI67 as well? MO#2 said that I have either a pleomorphic ILC or ILC with pleomorphic-like qualities, which means that it's somewhat different than the classic ILC (so even more odd…). This is the first time I heard of that.

    MsPharoah--I'm hoping to get my oncotype test sometime next week, although I'm decided on chemo based on the grade/proliferation characteristics of my tumor. I also have a second opinion for radiation Mar 10 (before my first chemo infusion!) and will be sure to come prepared to ask more questions of the pros/cons of doing it or not.

    Woody--I'm so glad that there did seem to be a majority in terms of treatment if I chose it, and I'm hoping I won't regret TC over ACT down the line!

    toomuch--thanks for bringing up the point about post-menapausal vs pre-menapausal--I did discuss this with my MO. She did say that may not matter as much, but what matters in my case is the high KI67 an the positive lymph node. Even though my other two MO's said to wait to see the oncotype score, I guess I just knew for my peace of mind too that I'll need to do chemo.

    karen--I think I went overboard with 4 opinions but it really did help me :) I'm hoping I'll only need two opinions for radiation!

    SoCalMom--I originally had an ultrasound and mammogram that caught two lumps in my right breast. Later my doctor ordered an MRI for both breasts, and they also saw something in the left breast, and biopsied that as well. Even though the left breast came back negative for cancer, it still caught something that the mammogram and ultrasound didn't catch. I would definitely try to get an MRI done.

    Genny--so sorry that you found yourself here, but I'm relatively new as well and these ladies are wonderful! Hopefully it's just a cyst on your ovary…do you have a history of bc in your family?

    Katarina--thanks for the reassurance--the more I think about it the more I know I made the right decision with the BMX :)

    My mom had me when she was 20 and I'm not sure about my grandma/mom

    Whew--sorry about the long post but I just wanted to catch up :) Hope everyone had a great weekend!

  • sgreenarch
    sgreenarch Member Posts: 528
    edited March 2014

    Diem, I'm impressed that you seem so on top of things, so organized. So kind to remember everyone's names.

    I, too, wanted to have more than one opinion. I went to three well-respected oncologists at 3 different institutions. It was worth it to go forward knowing that there was a general consensus. You seem to have enough good people more or less agreeing on your course of action.

    Wishing best of luck. We are with you.

    Shari

  • Woodylb
    Woodylb Member Posts: 1,454
    edited March 2014

    Diem,

    I am so glad to see you take control of your life, specially being so young!it is admirable . Whatever you do i hope it will keep the cancer away for a very long long time and that you will live a long healthy and prosperous life. We are always here whenever you need us. Good luck 

  • 4sewwhat
    4sewwhat Member Posts: 2,093
    edited March 2014

    Diem,

    Great leg work and way to take control!!!  I too was offered both of those chemos then after my surgery when they found so many nodes everyone jumped on the ACT wagon just because!  After a 2 hour appointment with the MO I finally decided on (he was the original and I came full circle!) he basically told me the same thing.  ACT had a slightly higher benefit, but with Lobular and strong ER positive and mine was grade one and slow, the more aggressive ACT in my head wasn't any better given the extra risks it came with.  I had done so much research that my doctor was comfortable with my making that decision.

    My Ki-67 was only 9 and dropped to 7 and my oncotype came back at 13 which balanced out the node issue somewhat.

    During chemo because it was going so well and I really didn't feel bad at all, I offered and asked about doing 6 TC instead of 4.  I offered more than once.  I figured that since I didn't do ACT and go the stronger route that maybe two more treatments would balance that out.  My doctor told me that there are no studies that show that 6 treatments are better than 4.  So 4 it was!

    Best of Luck to you!  TC is really "doable" as they say.  I had a head cold in January that knocked me out worse than chemo ever did!!

  • Lojo
    Lojo Member Posts: 303
    edited March 2014

    Diem, good job on all the research - I hope that your treatment goes well.

    4sewwhat - I'm curious how you got an Oncotype score with the large # of positive nodes? I ask because I'm still battling with my insurance company over some of the costs related to the test - they initially denied it because they said I didn't meet the criteria (ER/PR+, Her2 negative, no node involvement, AND tumor 4cm or less (this was where I got in "trouble" because my tumor was slightly more than 4cm (but less than 5). I dealt with Nurse Ratchett on the phone with Blue Cross, and eventually had to unleash my surgeon on them (he was apparently effective in changing their minds - I can imagine their ears are still burning even now), and they are paying for the testing itself (to the company in California, but I just got a bill from the hospital's pathology department, since they denied the claim for processing the tumor sample. Argh. It's not a huge bill, but it still irks me. 

  • MsPharoah
    MsPharoah Member Posts: 1,034
    edited March 2014

    Hi Diem.....just wanted to let you know that I had TCX6.  My onc believes strongly that  ACT is more agressive than TCX4, but she said the early trial results show that TCX6 is as good as ACT.

    I hate that there are so many opinions and my post is not intended to confuse you, rather to make sure you know that TCX6 is not uncommon.

    I told my oncologist that "if we are going to do chemo, then I don't want to just pi$$ it off".  She would not prescribe ACT for me due to my age and the fact that I was node negative and had a grade 1 tumor....but she had no problem increasing my TC from 4 to 6 doses.   If I hadn't said that to her, I bet I would have had 4 cycles instead.  I would have had more treatments if there was any science that it killed more cancer!!!

    The reality is that once you start your active treatment...chemo, radiation, etc, you are a "baddass cancer killer".    If someone called and asked "Whatcha doing?"  The answer was "Killing Cancer" or "Kicking Cancer's A$$".

    Good luck, honey.  If you need anything, feel free to PM me.

    MsP

  • Momine
    Momine Member Posts: 7,859
    edited March 2014

    Just to jumble things even more, I had FEC (5-FU, Epirubicin, Cytoxan) X4 followed by TaxotereX4, so a total of 8 rounds of chemo. 

  • 4sewwhat
    4sewwhat Member Posts: 2,093
    edited March 2014

    MsP,

    I too hate that nothing is consistant!  Ask 20 doctors, get 20 variations!!

    Lojo,

    They knew I had some node involvement from my biopsy and scan but though only 2-3.  We were all pretty shocked with 22!  I chose to believe they worked their asses off and did their jobs, not letting a thing slip by.  My story and I am sticking to it!!!  I had some extra nodal extension, but no LVI.

    Anyhow, my doctor ordered my oncotype from the biopsy tissue so it was before we knew about all the nodes.  I got lucky with that because it was a nice piece of the puzzle to have.

    The missing piece that bugs me is I only have tumor pathology.  The nodes can be different, more aggressive sometimes.  They don't usually path it though.  I just wish I knew if it was the same.

  • karen1956
    karen1956 Member Posts: 6,503
    edited March 2014

    Diem...sounds like you have a plan that  you feel good about....keep us posted when you start chemo...we'll be with you all the way :)

  • DQ77
    DQ77 Member Posts: 39
    edited March 2014

    Shari--so what chemo treatment did you end up going with after all your consults?

    4sewwhat--I totally feel you with. With the last MO that I'm going with, I asked her about TCx6 and she said that she doesn't generally do it because there's no confirmed data that it benefits yet, but her equally respected colleague does offer TCx6 on occasion. I'm glad TC was doable for you! Hopefully I can get through it easily too. And I saw that you did cold caps?? I'm actually going to do the dignicap trial with my TC treatment!

    MsP--That's so awesome that your MO was on top of the early trial results with TCx6.  My first MO did mention that it's currently in trial, and that she likes to offer TCx6 to patients who can't do the A because of pre-existing heart problems. But I'm sure you did take that cancer down with those two extra rounds ;) My MO#3 did say that there are studies correlating longer treatment with better survival rates!

    Woody, Lojo, Karen--thanks for the kind wishes, I'll definitely keep you guys posted!

  • 4sewwhat
    4sewwhat Member Posts: 2,093
    edited March 2014

    Hi Diem!

    I did cold cap and iced my hands and feet.  Declared myself Mayor of Popsicle Town!!  In fact I am a little over 6 months from last chemo and sitting here with color on my hair!  It worked well and I shed about 40% I would say.  Good luck with your trial!   And your chemo!  My doc is really into allthe studies and research.  Plus he is pretty aggressive so I was really surprised he stopped at 4 when I offered and asked about doing 6.  Only time will tell and they don't know because 2 people with exact same diagnosis and treatment can have polar opposite results.  He doesn't like it when I use the term CRAP SHOOT!  But it is what it is!!!

    Hi Karen, Nice to see you!!

    HOpe all you other Ladies are having a great week!

  • sgreenarch
    sgreenarch Member Posts: 528
    edited March 2014

    Diem, I didn't have chemo. I had an oncotype test and the result was 17, considered to be the high end of low. I was 49 at dx, with multifocal tumors in my left breast. nodes negative. I had a mastectomy and wanted to throw the kitchen sink at the cancer, yet I couldn't find an oncologist who was willing to prescribe chemo to me. I know this sounds strange, but it scared me to NOT have chemo. I felt like I wasn't doing enough. For this reason I needed to hear the same thing three times. When all three oncs adamantly concurred, that in my case the benefit vs risk ratio for chemo wasn't worth it, and that hormonal treatments were my best bet, I was reassured. I always think it's best to get as many opinions as you feel you need to put your mind at rest.

  • DQ77
    DQ77 Member Posts: 39
    edited March 2014

    4sewwhat--Did the icing of your hands and feet helped with neuropathy? I mentioned that to my oncology nurse and she said that it doesn't help and deterred me from doing it.

    sgreenarch--I'm glad that you didn't have to do chemo! And definitely better piece of mind that three MO's said so :) For most people with ILC I do hear that hormonal therapy is much more beneficial because ILC tumors tend to be very receptive to ER/PR.

  • 4sewwhat
    4sewwhat Member Posts: 2,093
    edited March 2014

    I do feel like the icing helped.  After my third TC I had slight tingling in 3 toes on my right foot and it has since gone away.  I had big problems with my left ankle, but I had broken (shattered in 6 places!) it just a few months prior and it was not completely healed when I started chemo.  I also iced because I had heard the hand/foot syndrom thing was awful where like your soles and palms were burnt and could peel.  I wanted to stop that if I could!!

    I used clay packs I found at walgreens and devised these mit things that I slid my hands and feet into.  I also put an extra ice wrap around my ankle.  Funny the hair on my legs kept growing where the cold was!!   If anyone wants info on how I made them I would be happy to pass it along.

  • karen1956
    karen1956 Member Posts: 6,503
    edited March 2014

    My onc has told me many times that the AI's were more beneficial than the chemo, but for me chemo was a given!!!  So for you gals that your oncs say chemo is notnecessary and that AI's or Tamox are indicated and very beneficial, trust them....As 4sewwhat said, I agree its a crap shoot!!!  Only time will tell how long I stay NED, but I am thankful for every day...I'm just marked 8 years from Dx and bilat.

  • 4sewwhat
    4sewwhat Member Posts: 2,093
    edited March 2014

    And it hasn't slowed you down a step Karen!!!  NED rocks and I am SO looking forward to following in your footsteps!

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